Monday, May 30, 2016

(As some may have noticed, it's been a while since my last blog post. This is in part due to some of my recent struggles with progressive MS and its attendant and ever-increasing obstacles, but also too because I think I'm suffering from a little bit of "blogger fatigue". I've been writing this blog since February 2009, or almost 7 1/2 years, an endeavor that has truly been a labor of love that has rewarded me in ways I never could've imagined when I first came up with the name "Wheelchair Kamikaze". Still, of late I have been finding my motivation levels a bit depleted, so rather than shortchange readers by putting out essays produced more out of obligation than dedication, perhaps it's best that I take a little break. I'm certainly not talking months, probably only a few weeks, but I think just a short vacation from being The Wheelchair Kamikaze will do Marc some good. I hope you understand.

In the meantime, here's an essay I first wrote back in April, 2010, with some recent updates. Though now over six years old, the topic it covers may be more pertinent today than it was when I first wrote it, as the corrosive and corruptive influence of big money on big medicine is more insidious now than ever. As I've stated many times on these pages, I firmly believe that capitalism is the greatest creator of wealth in the history of mankind; however, I also believe equally firmly that the marriage of capitalism and medicine is an unholy one.)

Living life with a chronic illness such as Multiple Sclerosis gives one an inside view of the medical establishment, a view that healthy people rarely glimpse. In the blissful ignorance of good health, modern medicine appears to be bright and shiny, a miracle machine complete with magical elixirs, futuristic technology, and a sophisticated understanding of the maladies that strike human beings. Headlines and television news anchors shout about the latest medical breakthroughs, and a stream of television commercials assure us that there are pharmaceutical remedies for everything from cancer to osteoporosis to erectile dysfunction. Once sick and thrust into the belly of the beast, though, this illusion starts to fall away, and a different reality emerges.

Although there have been some incredible advances made in our efforts to heal sick humans over the last 50 years, there are still vast swathes of patient populations whose illnesses remain poorly understood, insufficiently and ineffectively treated, and ultimately incurable. Problematically, many of these patient populations generate billions and billions of dollars for the modern medical hierarchy, a situation that sets up a paradox within our profit driven medical establishment. Cure these patients, and vast sums of money and an elaborate infrastructure would simply evaporate; keep them perpetually reliant on hyper expensive medicines and medical procedures, and reap the fruits of an unending money machine.

Before I am accused of being a conspiracy nut, let me state outright that I do not believe that there is a cabal of evil, mustache twisting, demonic connivers assembled around a huge flaming conference table, snacking on deep-fried baby’s arms while plotting to keep cures and remedies hidden and out of reach from the desperately ill. If this were the case, the solution would be fairly straightforward; simply "out" the conspirators, and the walls would come tumbling down. Rather, the problem has become incorporated into the system itself, insidious and inherent, the logical outcome of the evolution of a medical industrial establishment that has come to view sick people as consumers and horrendous illnesses as opportunities for tremendous financial gain. This system does not require people with malicious intent to keep it functioning; it only needs decent people doing their appointed jobs to the best of their abilities to keep the gears turning.

As previously stated, the past 40 or 50 years have seen some incredible medical advances, most of them in the fields of surgery and in the treatment of traumatic injuries and infectious illnesses. Organ transplants, less invasive surgical techniques, and an ever increasing understanding of human physiology have combined to put a shine on many facets of modern medicine. A patient's chances of surviving a heart attack, or avoiding having one in the first place, are much better now than in 1950. Knee injuries that in decades past would have necessitated complex and sometimes crippling surgery can now be done using arthroscopic techniques requiring only tiny incisions, with recovery times measured in a few short weeks rather than many grueling months.

The treatment of some of our most dreadful illnesses, though, have not seen such advances. Ask the average person about the chances of surviving cancer today vs. 1950, and I would expect that most would tell you that your odds of beating the disease are much better now than they were 60 years ago, a belief driven largely by the almost relentless marketing done on behalf of the medical profession. The New York Times, though, reports that "the death rate for cancer, adjusted for the size and age of the population, dropped only 5 percent from 1950 to 2005." (Click here for article). Headlines blaring about the latest advance in cancer drugs rarely mention that the studies cited often declare a cancer drug "effective" even if it increases the lifespan of the patients taking it by only a handful of weeks. The fight against some forms of cancer has indeed benefited from modern medical advances, but for many cancers, little real headway has been made. (Update 5/30/2016: I'm happy to report that since I first wrote this essay, there have been some advances in the fight against certain cancers. Cutting edge biotech firms seem close to making some major breakthroughs in using the body's own immune cells to fight some very intractable cancers, and though most of these possible treatments are still in early to mid stage research, some do show tremendous promise. Fingers crossed, these efforts will at some point in the not-too-distant future lead to some dramatic advances in the fight against cancer. Having said that, we've still a long, long way to go in conquering these horrendous diseases.)

Since the vaccine for polio was found in the mid-1950s, very few if any diseases have actually been eradicated. Instead, the trend is towards turning diseases such as diabetes, AIDS, some cancers, and multiple sclerosis into treatable chronic illnesses, their patients heavily reliant on fantastically expensive medications and interventions. The reason for this lies largely in the fact that over 70% of our medical research is carried out by pharmaceutical companies, whose primary mandate is to generate financial profit. (Update 5/30/2016: within the last few years the chronic disease Hepatitis C has, in fact, largely been cured. Of course, the drugs that cure this disease is hideously expensive, and are among those that have led to the recent political uproar over drug pricing, which in my opinion is long overdue. Yes, the research and development of groundbreaking drugs is extremely expensive, and for each successful new drug there are multiple failures. But there is no reason that pharmaceutical companies be pressured to recoup their investments in just a few years, as is currently demanded by a rapacious Wall Street culture that demands year after year bottom line growth, no matter how immensely profitable a company may be.)

The job of a publicly traded pharmaceutical company CEO is to constantly drive up the price of his company's stock, not to facilitate the creation of drugs that would be of the most benefit to the patients taking them. This isn't a question of morality, but of economics. The drug companies, and those who manage them, are merely doing what every other business endeavors to do in our free-market capitalist system, to constantly increase profit. I'm all for free-market capitalism; in recorded history there has been no better economic driver and creator of wealth. Unfortunately, when applied to healthcare, in many cases good economics has led to very bad medicine. The corroding influence of big money, in addition to an environment of lax regulation, has led to some shocking abuses of the system, such as the marketing of drugs that are known to be dangerous (click here for info), and the suppression of studies whose results are unfavorable to the drug being tested (click here for info).

Over the past three decades, pharmaceutical companies have discovered that the best way to increase profit is to market "blockbuster" drugs that patients must stay on for the rest of their lives. In the case of multiple sclerosis, this has led almost all research to concentrate on compounds that alter or suppress the human immune system, based on the "autoimmune model" of the disease, which states that MS is the result of an immune system gone awry. In reality, it's becoming more and more clear that the aberrant immune response seen in MS patients is more a symptom than a cause of the disease. (Update 5/30/2016: Despite a growing body of evidence that points to this fact, until very recently almost all MS research has focused on new and more effective ways of suppressing parts of the immune system. Now that the drug market for relapsing remitting MS is – in the words of industry executives – saturated, researchers have begun to focus on progressive MS, whose disease process does not respond to most immunosuppressive agents. Therefore, the research community is finally beginning to rigorously investigate other potential mechanisms of disease progression, which may ultimately lead to more effective treatments for all flavors of Multiple Sclerosis)

Since the mission of pharmaceutical companies is to generate the most bang for their research bucks, they direct their research dollars to projects that have the best possibility of leading to substantial profit. This, in turn, influences the behavior of even the most well-meaning medical researchers, who, just like everybody else, need to feed their families and pay their bills, and who naturally seek to advance their careers. Thus, they are drawn to investigations that will most likely win hotly contested research dollars. That funding, the vast majority of which comes from the big pharmaceutical companies, goes almost exclusively into researching novel compounds that can be patented and remain the sole property of the company that discovers them for many profitable years.

This same dynamic inherently underfunds research seeking to eradicate diseases that have each, in effect, become multibillion dollar a year industries. This is not because of evil or malicious intent, but instead is the result of the economic engine that drives what can be called the "medical industrial complex", the misguided marriage between profit-seeking corporations and the healthcare industry, which requires a perpetual supply of sick people to keep the money flowing. This need for patients is so intense that it can sometimes lead previously untreated and relatively benign conditions to be deemed diseases that require pharmaceutical intervention, as in the case of osteopenia (click here for details).

This same drive also leaves many potentially effective but unprofitable remedies untested and relatively ignored. Drugs such as Low Dose Naltrexone (LDN) and the effects of diet and natural remedies have barely been studied for their impact on MS, simply because there is no profit to be made from them. Recently, a cheap blood pressure medication, Lisinopril, has been shown to have some promise as an MS drug. This discovery wasn't made by any run-of-the-mill research scientist, but by Dr. Jim Steinman, one of the inventors of Tysabri, a very expensive and controversial MS medication that is very effective but also carries with it the possibilities of very serious side effects. Dr. Steinman would like to see a full scale human study of the effects of Lisinopril, but says that "Lisinopril is as inexpensive as any prescription drug at this time, so pharmaceutical companies won't see any profits from financing a study" (click here for article). Thus, the drug remains unstudied in its effectiveness against MS, for now and probably forever.

It's hard to see a solution to this disheartening status quo, other than a significant increase in the government funding of medical research. If the $2.5 billion cost of a single nuclear submarine – the US currently has about 75 commissioned subs – were redirected towards foundational medical research, untold thousands might eventually be cured of currently untreatable or undertreated dread diseases. Unfortunately, the trends are heading in the opposite direction, with more and more funding coming from the private sector as public dollars become scarcer and scarcer in this age of soaring deficits and cries for smaller government. Though private research certainly has tremendous value, keep in mind always that the profit motive dictates against a search for cures. Undoubtedly, the outcry over the price of the recently approved Hepatitis C drugs – which prompted the pharmaceutical company that developed and manufactures it (Gilead Pharmaceuticals) to cut prices, sending stock prices plummeting – will give pharmaceutical companies pause when contemplating similar research goals for other diseases.

As a patient suffering from MS, the situation is incredibly frustrating, as it's clear to me that much of the research now being done on the disease is not conducted with patient benefit as its primary underlying goal, but rather with the profit potential and market share that each patient represents as the target. The medical industrial complex is a self-perpetuating entity that will not easily be shut down, the sheer force of its financial weight creating an almost irresistible momentum.

I'll let my final words on the subject be these: As a just and honorable society, please, view me first as a patient, not as a consumer. Human suffering should never be treated as a commodity, regardless of the considerable economic incentives to do so.

Marc take some well deserved time off you have definitely educated a generation of us MS'rs.Personal not my wife Deah passed away from Leukemia May 17th she courageously battled this terrible disease for 10 months, we have been together for 40 years (August) 'it' almost took my mind off of my MS.

I'm so sorry to hear of your loss. I know how devoted your wife and you were to each other, and can barely imagine the depths of your sorrow. I truly believe that no person ever really dies as long as they live on in our hearts. Please accept my sincerest condolences.

Take a break, Marc...you have more than earned it. We will all be waiting for your return as you speak for all of us and are inspiring! Thank you for reposting this...I just wish I knew something that we could do to make the rest of the population angry about this sad state of affairs.

Sadly, this is all so true. Drs are limited to options that are fda approved and add to that patients are limited in choosing what their insurance policies will cover. There's no money in it, but making the medical field vocation rather than profession might produce more humane results. Love for fellow man vs profits. Of course that might require sacrifice, which society is not so hot on. Also, where is the donate to Marc and Karen's much needed vacation button? Or can I just not see it on my phone? Just an idea. We are all in this together and greatly appreciate your hard work researching and sharing your information with us. Have a restful vacation!

Thanks, Briana. No, there isn't any "donate to Marc and Karen's vacation" button, and there never will be. I made the decision early on, when this blog first started becoming popular, that it would not be a moneymaking venture. That's why it's completely free of any advertising or sponsorships. I've no desire to profit from this horrible beast of a disease.

I hope your break allows you to return to your blog reinvigorated. Your writing is thoughtful and compelling. These musings in particular speak to me, since I was a physician for 25 years. It has certainly been an eye-opening transition for me; I am now quadriplegic from progressive MS. I never noticed the machine when I was a cog, but now that I'm a "consumer", it's so starkly obvious.

Thanks so much for your very incisive comment. I'm very sorry to hear of your diagnosis and condition, and that you have unfortunately seen both sides of the coin. Keep up the fight, we've little choice otherwise…

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...